The day starts early when you have two boys who need to have their prophylaxis treatment before they go to school. Michelle and Martin are parents of two boys with severe haemophilia A, Tom is ten and a half and Ben is nine.

6.30am

It’s a treatment and a school day, so Michelle is up very early. The boys have their prophylaxis on alternate days. When this day falls on a weekend, there is a bit of a sleep in for everyone, and treatment is done later in the morning. But not today! Between 6.30am and 7am Michelle puts Ben’s anaesthetic cream on the inside of his elbow – the boys usually use alternate arms for their treatment.  Tom is older, so he doesn’t need the cream any more.

7am

Michelle is dressed and ready for the next steps. The boys are wide away now and about to make themselves breakfast. The TV is switched off. TV is only allowed to be turned on after the boys have finished their morning routine of getting dressed, having breakfast, brushing their teeth, washing themselves, and packing their bag for school.

 

 

 

 

8am

Treatment is the last task before they head off to school at about 8.30am. During treatment the boys are allowed to watch TV, as it’s relaxing and it’s a distraction from the needles. Michelle gives the infusion to Tom first. It takes about ten minutes. Ben is very hands on; he likes to help with preparation, like mixing the factor and swabbing. They are not quite ready to start self-infusing just yet but they are getting very near that stage. Michelle and Martin and the boys have been going to some training for self-infusing in Our Lady’s Children’s Hospital in Crumlin. They have found the training and the nurses to be of great support and it is hoped by the end of the year the boys will be self-infusing.

 

 

 

8.15am

Its Ben’s turn now. Michelle is calm and relaxed. Ben is distracted this morning, so on the second attempt Michelle gives him his factor.

9am

The boys are now in school. Michelle works from home so she can be available to drop into the school if there are any issues. It doesn’t happen often, and she rarely needs to go to the school. With prophylaxis every second day, the boys always have some factor coverage, and they are boy careful enough even though they like to get involved with their friends playing.

The school has done a good job working with the family and making sure that problems are minimised. Michelle and Martin informed the school of the boys haemophilia, and also asked the Irish Haemophilia Society to give a talk to some of the teachers explaining exactly what haemophilia is. Did you know the Irish Haemophilia Society offer talks to schools, and have a publication for teachers and playgroup leaders? Click here to download a copy of the publication. Most of the teachers now understand the basics about haemophilia, and know when to contact Michelle or Martin.

The boys are encouraged to try out different sports and activities at the school. They are not left out. The sports teacher understands haemophilia and the risks, joint problems and bleeds. Fortunately the boys haven’t wanted to play rugby yet!

10am

There is a phone call from TCP (the company who delivers the factor), arranging deliver of some factor. The factor will be delivered to the door, and Michelle will then place the factor in a special fridge they have in the kitchen.

 

 

 

 

1.30pm

Michelle gets a call from the school. Ben fell at lunchtime in the playground, and has a small graze on his knee. The teacher cleaned it up and put a band aid on it, and is keeping an eye on it, and knows to ring Michelle if there are any problems. Michelle has got to know his teacher and feels she can trust her. Thankfully Ben is fine and by the time school is finished there is not a bother on him.

 

 

 

3.30pm
School is over and Martin collects them today. When they get home they do their homework straight away. Martin has promised to bring them swimming. The boys have swimming lessons every week, and they really enjoy this. Swimming is a fantastic exercise for young boys with haemophilia.

6pm

It’s dinner time, and after dinner it’s time to take the dog for a walk in the park. Michelle, Tom and Ben head for the park which is only ten minutes away. The boys bring their kite and have great fun.

8.30pm

The boys are getting ready for bed, in between having a pillow fight in their bedroom. After a little while they settle down, get into bed and fall asleep.

 

 

 

 

9.00pm

Michelle and Martin have a cup of tea and a chat. They chat about how lucky they are to have two wonderful children, chit chat about how they coped when Tom was diagnosed with haemophilia and realise they have come a long way as parents. They talk about the family they met at a recent I.H.S. conference, who are only starting out, and how close they have become with them. It’s great to be able to pass on tips and advice to families with a new diagnosis. They talk about plans for the weekend, maybe a cycle in the park followed by a picnic, weather permitting.

Three years ago the boys started to learn how to swim. Michelle and Martin feel some sort of suitable physical activity is very important for the boy’s development and for keeping them fit and healthy as well. Swimming has taught them discipline, focus, and has helped them to feel confident.

Haemophilia might not be curable, but it certainly is manageable. Tom and Ben are proof of that.

Debbie Greene
Irish Haemophilia Society